I've just been made aware that (in my area at least), and despite a referral from my GP, the time I will have to wait to even be considered for an electric wheelchair is ..... THREE YEARS! For a manual wheelchair its 3 months. I've got a manual wheelchair but can't self-propel so am entirely dependant on someone to push, and so have no independence which is affecting my mental health.
This may not be the case in other health trusts, but it is in Lancashire. I'm so appalled I can't tell you - many patients will DIE before they get one - which makes me so angry, even though I don't expect to be one of them. I just thought it might be helpful to make others aware of this?
It took me a long time to make the request - I felt I should do my best to "manage" but when it became more or less impossible for me to go anywhere I discussed it with my lovely GP who could not have been more supportive and kind. Now I just feel like crying.
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Artyrosie
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14 Replies
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Hi artyrose
Please try not to despair and I can believe and feel your frustration. In Sunderland they wouldn't help me to get a removable foldaway wheelchair ramp so that I could get a power chair because I didn't need a wheel chair in the house where there isn't room enough to warrant the use of one! I ended up having to pay for one to be cutom built
It totally staggers me what lengths we must go to to get what we need
All that aside , I cannot remember if you get higher rate mobility or not if you do have you considered motability.com and leasing a power chair? I know it means paying a hire charge etc but they come fully insured and will be repaired etc if it breaks at no extra cost to you.
It doesn't take too long to sort out and you can check your eligibility on the site.
Fluffies of comfort with a brew for you and hope you can sort something out.
It is one of the most difficult things to come to terms with the fact that you do need one now N OW! It sounds very difficult to get a chair and you have my sympathy.
I hope you get some satisfaction/resolution to your problem soon.
xgins
Hi Artyrosie . I was lucky enough to get PPI back from my bank and was able to afford to buy second hand for £200 . You have to be prepared to take a chance on the batteries because they are expensive to buy. £60 - £100 pound each off Ebay. So a £200 pound chair may work out at £400 if you are unlucky.
But it is something that you may like to look into..Good luck I hope you manage to get one soon.
Hi Artyrosie, how awful for you, I know it takes years before we give in to these things so it must be torture to be told to wait three years. I cannot remember the name but i came across a charity online that helps with the cost of such equipment, prrhaps you could try googling it. I also know the red cross can supply wheelchairs, but do not know what type. I hope you find a solution sooner than three years, isolation through illness is soul destroying at times.
I am so sorry to read that, and totally devastated for you! 3 years! When my wife first needed her push wheelchair she had to wait about 6 months (we are in Derbyshire), and I thought this was ridiculous.
I was wondering if you could try your local CVS (community voluntary services) or go through your local council to see if there are any grants available to purchase you an electric wheelchair?
I genuinely hope that you can find some resolution to this situation and get the help that you need and deserve my friend.
There is the quite expensive option of taking what it would have cost providing a power chair as a voucher against something more practical than the motorised scrap heaps that have the 3 year waiting list.
Something with more suspension than an extra thick cushion is a must many wheelchair designers have overlooked this but it does not help pain management with what is termed vibration stress, some idea of what your waiting for may colour your thinking on is the waiting worthwhile.
I agree Ian I have the moulded comfort seat in my power chair which was an add on option and the difference on my back when I'm out in it compared to the other heap that I have is trully amazing!! Though it does also have a shock absorber
The vibrations from the manual chair are really painful and for days after too, crucifies my back and hips.
Point well made about the vibration problems and the pain it causes - its why I can't bear to get on buses! By the time I get where I'm going I'm so sore I might as well stay on the bus and go home again. For the same reason I really don't find my manual wheelchair (which I paid for) at all comfortable to sit in, even with memory foam cushions, so I'd already figured out that I would need a power chair with the very best seat possible.
Am really not sure what to do now. We do have some savings and my husband is prepared to spend this to get what I need, but this really shouldn't be necessary should it? I am entitled to the provision on the NHS after all, and I don't want to spend our painfully scraped together funds this way unless I'm forced to. On the other hand I wouldn't feel it right to apply for charitable help, when I do have money set aside, but this is for our retirement! We live in a tied house and have never owned our own, and in 3 years will have to leave it. This money has been saved for any alterations and improvements we might need to make to a rented house.
Thanks for the thought about shopmobility ... but if I'm going to rent for 3 years while I wait I'd probably end up having paid for one! Still I will pop in and chat to them and see if they have any helpful suggestions.
The other part of my brain keeps saying ... well maybe I don't really need a powerchair. I still struggle with the idea that I DO, but actually without one I have no quality of life or independence. Am sure something will turn up ....
Understand your feelings of frustration I am wheelchair bound but husband pushes me...on better day have mobile scooter .....light weight ones even road and all terrain ones too...look them up given me many years of freedom even get them on public transport!?
Let me know how you get on...as I've been thinking Bern back in wheelchair and wanting battery operated on with head rest....have to apply and see how long get waiting list?
Wishing you all the best it does affect your mental health when you can't get out independent....all best wishes...keep intouch.....
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